Social Policy Advisory Group

Social Policy Advisory GroupThe Social Policy Advisory Group (SPAG), created in 2015, closely follows EURORDIS’ activities to promote the integration of rare diseases into social services and social policy.

The patient representatives in the SPAG provide grassroots experience on the social challenges experienced by patients and families and provide advice in relation to social policy, provision of social care and related issues (such as holistic care, social services, social innovation, disability, special education, psychological support). This helps to guarantee the formulation of patient-centric approaches to the different social challenges throughout the work of EURORDIS.

The SPAG is currently composed of 13 volunteer patient representatives and is led and supported by EURORDIS staff member Raquel Castro, Social Policy Senior Manager.

 

 Name

Organisation

Country

Beata Boncz

HUFERDIS, Hungarian National Alliance for Rare Diseases

Hungary

Dorica Dan

RONARD - Romanian National Alliance for Rare Diseases

Romania

Giulia Mariani

Italian Tuberous Sclerosis Association

Italy

Gwenn Crohin

ALAN, Luxembourg National Alliance for Rare Diseases

Luxembourg

Isabel Fernandez

FEDER, Spanish Federation of Rare Diseases

Spain

Maria Montefusco

Former EUROPLAN advisor; Nordic Council for Welfare, Disability

Sweden

Nataliya Grigovora

Huntington Association Bulgaria

Bulgaria

Silvia van Breukelen & Ildiko Vajda

VSOP, Dutch Genetic Alliance

Netherlands

Stephanie Jøker Nielsen & Mette Grentoft

Rare Diseases Denmark

Denmark

Suzy Cooper

European Federation of Williams Syndrome

United Kingdom

Vlasta Zmazek

Croatian National Alliance for Rare Diseases

Croatia

 

Page created: 01/03/2016
Page last updated: 28/02/2018
 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases